Re: Time for my experience and help

You are really wonderfull.

What i

Re: Time for my experience and help

Carlos,

At my dad

Re: Time for my experience and help

In my case, radiation reduced the tumor by 50%.  That was the good part.  The bad part of radiation is that it left me weak and unable to eat much for about three weeks.

Re: Time for my experience and help

Bazel, Lisa thank you.

Right now after reading all your answers and other posts and taking into account my mom age(74) I would choose no therapy but five minutes later knowing the overall health and strength of my mother i

Re: Time for my experience and help

Carlos, take a deep breath, in and out, in and out! That is why you are going to talk to the Oncologist. He will not throw you to the wind. He will help you make this decision. 74 is not that old in today's terms. Teddy is 77 and still going through what ever he has to do. Says he wants 10 more years! Long enough to see all grand kids married. If we felt there was no more hope we would gracefully say no more! But when a person is still vital for their age and you have stated your mom is in great health with a lot of strength I am sure the doctor will take all that in to consideration. You will not be alone in this decision. If you need to think about it just tell him you will call him in a day or 2. I am so hoping everything will ease up for you after tomorrow. It seems that no matter what, we all feel a relief when a decision is made. Hang Strong!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Time for my experience and help

Very best of luck with the visit to the Oncologist, Carlos!!  I'll be thinking of you both.  Julia xx

“When it is dark enough, you can see the stars." - Ralph Waldo Emerson

Re: Time for my experience and help

Hi Carlos,

This is a very unusual disease, because it's so unpredictable. Some people have great results with chemo, and others have no improvement at all. It's the same with radiation. So we can't really say that chemo and radiation have similar effectiveness. Also, some patients can have radiation and others can't, because it depends on the location of the tumors.

But you should definitely ask if your mother can have radiation. For many people, the side effects are very mild. I had only heartburn (a burning feeling in my stomach) and some fatigue. For many people, the side effects of chemo are a lot more difficult.

The problem with radiation is that you have to go to the clinic five days a week for 4-6 weeks. But the treatments take only 5 minutes each time, and they are completely painless (like getting an x-ray.)

I hope this information helps you and your mother. I am SO happy to hear that she's feeling better, and that her mood is better too!

Best wishes to both of you,

Kristin

Peace, hope, and healing to all!

Re: Time for my experience and help

Hi;

This first meeting has been used by the oncologist as an initial data collection(general feeling after surgery...)
Because of surgery is very recent and she is still too weak, oncologist has decided to wait a little bit and at the end of this month make new test bloods and scan and so decide about the therapy with more data.

As Oncologist knew that my mom doesn

Re: Time for my experience and help

Many thanks for updating us, Carlos; it sounds a promising start.  I join in your hope of your mum's continued improvement.

Julia xx

“When it is dark enough, you can see the stars." - Ralph Waldo Emerson

Re: Time for my experience and help

Hi Carlos,

Thanks for the update on todays meeting. I too hope that your mums recovery continues over the coming days and weeks.

Best wishes to you both.

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Time for my experience and help

Dear Carlos,

I'm glad that your mother will have more time to rest and get her strength back before you have to make any decisions. I know she will feel a little better every day. We'll be thinking of you both.

Best wishes from Kentucky, USA!

Kristin

Peace, hope, and healing to all!

Re: Time for my experience and help

Thanks a lot for your support.

The recovery is being very good without any problem until now and the decision about therapy is near.
Today we have been with the surgeon first time after my mom left hospital.The situation is a little special since surgeon and oncologist are from different hospitals, why this is another matter.

The problem of this is that today, for example, surgeon didn

Re: Time for my experience and help

Hi Carlos and good to hear from you!  I feel it is very important to have a TEAM
to rely on. Teddy & I each have our General Doctor, Oncologist, Gastrointestinal and Surgeon. They all cooperate with each other send all reports to each other as well. Everyone needs to be on the same page. In our cases generally it is the Oncologist calling the shots.  They should be more than willing to want to know what the other is doing. Our doctors have even talked to each other about us at times. I don't know the protocol where you live but when a patient has a rare disease why would they all not cooperate? I guess egos get in the way. So in the end they should all have input on the therapy. I would ask what the prognosis could be in having the chemo versus not having it? Then you and your mother would make the decision. These doctors should realize that we all have enough on our plates without their attitudes. You have the right to get opinions from them all. In the meantime I am so glad to hear your mom is doing so well from the surgery. And that's a great place to start from!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Time for my experience and help

Hi Lainy;

I guess Oncologist doesn

Re: Time for my experience and help

Wow, I am sure Marion will find that statistic interesting. Great idea, Carlos. Even if you just ask the surgeon that will help you to make a decision when the time comes. Good!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Time for my experience and help

Carlos....I agree with Lainy.  Cooperation between all physicians treating your Mom should occur.  Your healthcare system differs much from the one in the US therefore; I can understand the difficulties you are encountering.  And, this country, as you may be aware of, has many problems also when it comes to treating their patients.   
I am quite surprised by the volume of Cholangiocarcinoma patients in your area.  I assume that the public/state hospital is centralized and treats people from a wide area of Spain. 
While attending the European Gastrointestinal Conference in Barcelona I came in contact with many physicians from various countries.  Many of those countries do not at all use chemotherapy for their patients.  Only palliative care is offered.  Also, the availability of certain drugs is limited and/or non-existent. 
I am trying to understand the following:  Did the oncologist

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Time for my experience and help

Hi Carlos,

Good to hear from you and also good to hear that your mum is doing okay with her recovery. I hope she is also managing to get some sleep and that any pain is under control.

I agree with Lainy and Marion regarding the need for a team in treating your mum and also for all parts of that team to have access to all the latest scans, tests and info when they need it. In my dads case, he was diagnosed and treated under the NHS which I guess is the equivalent of your state hospital. His specialist and his team diagnosed the CC and concluded that it was inoperable. Had it been operable then he would have carried out the surgery. He also decided the treatment, PDT and carried that out and also followed dads progress for months after and we still see him. When he decided that chemo should be investigated, he refered dad to the oncologist who made the decision that it could not be done. As for CT scans, it is others that do that, sometimes in different hospitals but all the results go back to the specialist. And for local care, dad has his GP's who manage symptoms etc and who also have access to all the info they need. And all dads medical team are in close contact via the phone, meetings and letters/reports for his files. Everyone definitely needs to be on the same page and know what the other is doing/recommended etc.

I hope your mum's recovery continues and that you get things sorted with the doctors.

My best wishes to you and your mum

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Time for my experience and help

Hi Marion;

In Spain you have assigned an hospital by default but you have the option of changing(called second opinion) to another one that have more experience in the disease. Of course, if you have money you can go directly to a private one. But in Spain the the quality(doctors skills, devices..) difference between public/state and private is nothing, the only one(very important indeed) is that in a private hospital everythig is faster.
We ask for second opinion for the surgery but because of massification we returned to the original hospital for oncology. I don

Re: Time for my experience and help

Oh Carlos, here I go sticking my nose in!  Just from your notes I thought something strange about the Oncologist. She is trying to hide behind what she does not know because if she knew she wouldn't cop that attitude. I felt it from the beginning.  Sounds like an ego problem. This cancer has no room for egos. Of course this cancer is rare in her hospital as it is rare all over, what makes her hospital so special? Again she wants you to think she knows everything. Are you able to just seek a second opinion from another Oncologist? If I am correct all you have to do is take copies of your moms records to whom ever you want to see them? I am not trying to be a trouble maker, but I am concerned.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Time for my experience and help

Hi Lainy;

At this moment I don

Re: Time for my experience and help

Very, very best of luck for tomorrow, Carlos.

Julia x

“When it is dark enough, you can see the stars." - Ralph Waldo Emerson

Re: Time for my experience and help

Hi Carlos. Do not think so much as it will all be clear soon. One step at a time. First you get the test results and talk to the Oncologist and then everything will clear up. You will have your answers. There is no clear protocol when it comes to anything dealing with CC. Good luck today!!!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Time for my experience and help

Hello to all of you and sorry for the time without inform. After 6 months/ GEMZAR cycles (30 minutes per week) tomorrow we have an appointment with oncologist for the results of last week's scanner. Tell you that during these six months my mother has coped quite well chemotherapy (isolated cases of fever...) making a living relatively normal. Previous scanner (four months after the operation, Klatskin tumor with two positive nodes) came out clean and the blood test in these months have been within normal limits.

In the previous appointment oncologist commented that treatment was over and from now she should have routine checks directly with the surgeon.

Logically without having the results yet, what would you advice me according to your experience?

Thanks in advance;
Carlos

Re: Time for my experience and help

Hello, Carlos, good to hear from you and to know your Mother is doing so well.
Teddy's regime is to have LABS Monthly and to see the ONC every other month. I also get a copy of the LABS. He has a PET Scan 2 X a year. We hope your Mother has continued success.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Time for my experience and help

Carlos, that's great, we're so happy for you and your mother! After I finished treatment the first time, I had oncologist appointments and a CAT scan every 3 months. I'm sure the doctor will make a decision based on your mother's age and condition.

Good luck with everything!

Kristin

Peace, hope, and healing to all!